Patient Education 2016-11-16T12:17:11+00:00

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Pediatric Hematology and Oncology is the study and treatment of cancers and blood disorders in children. The Division of Pediatric Hematology and Oncology team is dedicated to helping you understand your child’s diagnosis, treatment options, and support services available. Please see below for information and patient guides on some of the most common diagnoses.

Common Oncology Diagnoses

Additional Cancer Resources

After Cancer Treatment

Common Hematology Diagnoses

Common Oncology Diagnoses:

Leukemia: This is the most common form of childhood cancer. It affects the white blood cells that are formed in the bone marrow. Leukemic cells accumulate in the bone marrow, replacing normal blood cells and sometimes spreading to other organs including liver, spleen, lymph nodes, central nervous system, kidneys and gonads. Approximately 6,000 children are diagnosed with Leukemia in the United States every year. Treatment for this disease may include chemotherapy, radiation, and bone marrow transplant, depending on the type and severity of the disease.

Acute Lymphocytic Leukemia Guides
ALL: Information for Patients and Caregivers
ALL: Información para Pacientes and Cuidadores

Acute Myelogenous Leukemia Guides
AML: Information for Patients and Caregivers
AML: Información para Pacientes and Cuidadores

Chronic Myelogenous Leukemia Guides
CML: Information for Patients and Caregivers
CML: Información para Pacientes and Cuidadores

Myelodysplastic Syndromes Guides
MDS: Information for Patients and Caregivers
MDS: Información para Pacientes and Cuidadores

Lymphoma: This is a cancer that affects the lymph nodes, and sometimes spreads to the spleen, liver, bone marrow, bones, or lungs. Treatment for lymphoma may include chemotherapy, radiation, and surgery, depending on the type and stage of the disease. Approximately 80-90 percent of children with lymphoma are cured with treatment.
Lymphoma: Information for Patients and Caregivers
Linfoma: Información para Pacientes and Cuidadores

Central Nervous System Tumors: Brain and spinal cord tumors are the most common solid tumors in children. There are about 4,000 new brain tumors diagnosed in children per year. These tumors can occur in children from infancy and into young adulthood. There are many different types of brain tumors. The most common childhood malignant (high grade) brain tumor is medulloblastoma which is treated with a combination of neurosurgery, chemotherapy, and radiation therapy. The most common benign (low grade) brain tumor is pilocytic astrocytoma which is usually treated with neurosurgery alone. The cure rates for most pediatric brain tumors is greater than 80%.

Kidney Tumors: The most common kidney tumor in children is called Wilm’s Tumor. This is a solid tumor of the kidneys that arises from immature kidney cells. Approximately 1 in 8,000-10,000 children is affected by Wilm’s Tumor. The average age at diagnosis is about three years old, although older children may be diagnosed as well. Treatment for this disease may include chemotherapy, radiation, and surgery, depending on the advancement of the disease.

Rhabdomyosarcoma: This is a soft tissue tumor that affects the muscle cells, and can arise anywhere in the body. About two-thirds of cases are diagnosed in children less than six years of age. Treatment for this disease may include chemotherapy, radiation, and surgery, depending on the advancement of the disease.

Retinoblastoma: This is a tumor of the retina, which is the thin membrane on the back of the eye that works like a camera, taking pictures of what you see. About 250-300 children are diagnosed with retinoblastoma in the United States each year. Children who might have retinoblastoma need to be carefully examined under anesthesia, with the pupils dilated. Treatment for this disease may include chemotherapy, radiation, and surgery, depending on whether the tumor affects one eye or both eyes, and if the disease has spread to other parts of the body.

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Additional Cancer Resources

Coping with Childhood Leukemia & Lymphoma
Cómo Enfrentarse a la Leucemia y la Linfoma en los Niños

Understanding Drug Therapy & Managing Side Effects
Farmacoterapia y Manejo de los Efectos Secundarios

Understanding Lab & Imaging Tests
Información Sobre las Pruebas de Laboratorio y de Imágenes

Food & Nutrition Facts
Información Sobre Alimentos y Nutrición

Cancer Related Fatigue
Fatiga Relacionada al Cáncer

Pain Management
Manejo del Dolor

Fertility Facts
Información Sobre la Fertilidad

Long-Term Effects of Treatment
Efectos Tardíos del Tratamiento

School & Learning Needs of Children with Cancer
Escuela y Necesidades Educativas de Niños con Cancer

Bone Marrow Transplant
Transplante de Celulas de Medula

My Bone Marrow Transplant Coloring Book
Pictures of My Journey – Coloring Book

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After Cancer Treatment (Long-Term Follow-Up)

Introduction to Long-Term Follow-Up
Introduction to Long-Term Follow-Up (Spanish)

Emotional Issues After Cancer
Emotional Issues After Cancer (Spanish)

Educational Issues After Cancer
Educational Issues After Cancer (Spanish)

Finding and Paying for Healthcare
Finding and Paying for Healthcare (Spanish)

Heart Health After Cancer Treatment
Heart Health After Cancer Treatment (Spanish)

Reducing Second Cancer Risk
Reducing Second Cancer Risk (Spanish)

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Common Hematology Diagnoses:

Sickle Cell Disease: A serious disorder in which the body makes sickle-shaped red blood cells. These cells are shaped like a crescent moon and do not move easily through the blood vessels. The cells are stiff and sticky and tend to form clumps and get stuck in the blood vessels. The clumps of sickle cells block blood flow to the limbs and organs. Blocked blood flow can cause pain, serious infections, and organ damage. Sickle Cell Disease is inherited, which means the disorder is passed from parents to children through the genes. In the United States, 1 in every 5,000 people is born with Sickle Cell Disease. The disease affects mostly African Americans and Hispanics. Treatment includes hydration, giving blood transfusions, certain medications, and bone marrow transplant in rare cases.
Parent Guide for Sickle Cell Disease (Birth to 6 yrs of age)
Parent Guide for Sickle Cell Disease (6 to 18 yrs of age)
Bobby the Blood Cell – Coloring Book

Thalassemia: An inherited disorder that causes the body to make fewer healthy red blood cells. Red blood cells are important because they carry oxygen and iron to all parts of the body. People who have thalassemia can have mild or severe anemia, which means they have a lower than normal number of red blood cells or not enough hemoglobin in the red blood cells. Depending on the severity of the disease, thalassemia may require regular blood transfusions to replace the missing red blood cells.
Guide to Alpha Thalassemia
Guide to Alpha Thalassemia Trait
Guide to Alpha Thalassemia Trait (Spanish)
Guide to Beta Thalassemia
Guide to Beta Thalassemia Trait
Guide to Beta Thalassemia Trait (Spanish)
Transfusion Issues in Thalassemia

Idiopathic Thrombocytopenic Purpura (ITP): A bleeding condition in which the blood does not clot as it should. This is because of a low number of blood cells called platelets, which help to stop bleeding. The cause of ITP is usually unknown, but it is usually related to infection. ITP may go away on its own, or with the help of medication. Sometimes ITP can persist for long periods of time, so regular appointments and careful monitoring may be needed to prevent serious bleeding.

Hereditary Sperocytosis: A defect in the outer covering of the red blood cells, which causes them to have a sphere, or ball-like, shape. These blood cells do not live as long as regular red blood cells, causing the child to become anemic. This means they do not have enough red blood cells to transport oxygen, iron, and other nutrients to all the parts of the body. This is a hereditary disorder, which means parents passed the gene for the condition on to the child.

Hemophilia: A rare bleeding disorder in which the blood does not clot normally. Patients with hemophilia may bleed for a longer time than others after an injury. They may also bleed internally, especially in the knees, ankles, and elbows. This can damage organs or tissues, and may be life threatening. Hemophilia is inherited, which means the disorder is passed from parents to children through the genes. Women can carry the gene for Hemophilia, but the disease can only present itself in males. Approximately 1 in every 5,000 males born in the United States has Hemophilia. Hemophilia is treated by replacing the missing factor into the blood by infusing medication into the veins. This can be done at the time of a bleed or on a regular basis to prevent bleeding.

Von Willebrand Disease (VWD): A bleeding disorder that affects the blood’s ability to clot. With this disorder, the blood is missing a certain protein that helps it to clot. If the blood does not clot, heavy, hard-to-stop bleeding may occur. VWD is inherited, which means the disorder is passed from parents to children through the genes. It is more common and usually milder than hemophilia. It occurs in about 1 in every 100 to 1,000 people. VWD affects both males and females, while hemophilia affects mostly males. Treatment includes replacing the missing factor into the blood by infusing medication into the veins. This can be done at the time of a bleed or on a regular basis to prevent bleeding.